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Bladder Cancer Recurrence: The Fear That Follows

One of the hardest parts of living with bladder cancer is dealing with the risk of recurrence. For some, recurrences pop up every few months or years, and the relief of being “cancer-free” is short-lived. For others, bladder cancer is diagnosed, treated, and the person remains in remission – but the fear that it could come back looms overhead. For others still, remission has yet to be achieved. No matter your experience, there are similar worries, milestones, and ways of coping. Our Bladder Cancer In America 2019 survey found the many ways by which bladder cancer recurrences affect our community.

Remission isn’t always permanent

Over 400 people with bladder cancer completed our survey, and only 28% of those remained in remission after treatment. The uncertainty of living with bladder cancer is one of the hardest aspects to manage.

Many people don’t stay bladder cancer-free with 36% having had at least one recurrence

There are no “routine” appointments

Follow-up visits sound simple. Just go in every three, six, or twelve months for a scan or cystoscopy and hope for the all-clear? It’s not nearly that easy for most people with bladder cancer, and fears about a possible recurrence can plague the days leading up to an appointment.

Follow-up visits cause anxiety for about half of those with active cancer or a past recurrence

Fears for the future

Worries about recurrence aren’t the only fear some people with bladder cancer experience. Anxieties about cancer progression can be emotionally taxing.

Those with active cancer or past recurrences worry their condition will get worse (86%) and feel sad (73%)

Bladder cancer goes beyond the treatment room

After bladder cancer treatment, many people might assume that life returns to normal. However, that’s often not the case, and many survivors learn to adapt to a “new normal.”

After treatment, only about half of those with active cancer or past recurrence return to activities they enjoy

Emotional support is key

Living with bladder cancer can be exhausting, physically and emotionally. Luckily, friends and family often step up to the plate and offer comfort and support to their loved ones coping with cancer.

People with bladder cancer receive support from family (78%) and friends (66%)

We want to thank everyone who took our survey for sharing so openly about their experiences with bladder cancer. Your responses help us to raise awareness of what life with bladder cancer is really like and provide information and support to others going through similar experiences.

The Bladder Cancer In America survey was conducted online from January through April of 2019. Of the 467 people who completed the survey, 420 were people who have been diagnosed with Bladder Cancer and 47 were caregivers of people with Bladder Cancer.

Take the 4th Annual Bladder Cancer In America survey


  • Lisamlmm
    7 months ago

    Thank you for putting into words the way I feel almost daily. Best of luck to everyone affected by this disease.

  • Guy Wheatley
    7 months ago

    Curious. I had my bladder completely removed. (Neo-bladder replacement) I wonder what the incidence of recurrence is for those who had the whole bladder removed. I realize similar tissue as the bladder lining lines the ureters. Does anybody have any data on this?

  • Sarah Wallin moderator
    7 months ago

    @guybwheatley, I found this study on recurrence in patients after neobladder replacement. It looks like the likelihood of recurrence in this study was relatively low (3.3% in men). I would be curious to hear of other studies on this too. -Sarah ( Team Member)

  • Sarah Wallin moderator
    7 months ago
  • maxwellmorris
    7 months ago

    I lean on the the words of my consultant. He is very knowledgeable on Bladder Cancer, I can trust what he tells me, which eliminates anxiety. This makes you feel optimistic & relatively happy.

  • Sarah Wallin moderator
    7 months ago

    @maxwellmorris, you can share your personal bladder cancer story here ( I look forward to reading it! -Sarah ( Team Member)

  • Sarah Wallin moderator
    7 months ago

    That’s great to hear, @maxwellmorris. It can be comforting and relieving to get information and advice from someone you trust. -Sarah ( Team Member)

  • maxwellmorris
    7 months ago

    Thank you for contacting me, I do have a story about my Stage 1 Bladder Cancer.

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